For 6 months I fought my fight to live. Today, I stood helplessly watching my mother as she passes away.
I made my choice back at the beginning to not tell my mother what I was going through. To spare HER the worry, I thought. I felt I was saving HER but what did I lose in the end? The last precious months of HER life, not mine.
So much more I want to say, but not ready for. I need to leave it here.
Sunday, May 29, 2011
Friday, May 27, 2011
Radiologist - take 2
This week we went to see a second radiologist. Dr. Faranghi was referred to me by Dr. Keleher. We always knew we were going to have 2 opinions because Dr. Rubin gave us one name (Dr. Doogie) and Dr. Keleher another. We respect both of their opinions, so it couldn't hurt to have 2 more doctors review my case and make recommendations.
Bob and I decided to definitely meet with Dr. F after we both agreed that the vibe we got from Dr. Doogie's nurse wasn't in line with all the rest of the people we met with along the way. She was not warm and inviting, kind and considerate - I'll stop there. No need to continue down the 'bashing' road.
We pulled up to our regular valet at Dyson just as we have since December. It was familiar to us - home. I checked in at the desk to another Mary and in no time was in the Radiology department discussing my history with Tara, Dr. F's nurse. She was warm and inviting, kind and considerate. She laughed along at our strange sense of humor. Much more our speed.
Dr. Faranghi came in and was also very professional and informative. While he was with us, he received 2 phone calls each from my doctors - Keleher and Rubin - to discuss my situation. We talked and shared and laughed. It was good and it felt right. He stepped out while I changed for the exam and Bob and I quickly agreed he was the one, this was the place. So we finished up and made plans for me to come back and prepare for the 28 radiation treatments in store for me.
Today, I spent a few hours at the Dyson center with the Radiation Therapists of the Radiology Department - Rabah (I hope I spelled that right - I kept calling him RaBOB!!) and Jen. These 2 took very good care of me while we spent the time creating molds of my torso and head and then the 'artwork' of my boob mold!
I layed back on a bed of beads like that of a bean bag chair. Rabah blew it up some how so it molded around my back, shoulders and head. We'll use this so I can ensure I'm in the same position every time for every treatment - they are looking for no mistakes or they'll miss the target!
Afterward, they had to mark the laser beam positions on me. I had different electrodes placed on and around me and I went in to the CT scan machine several times to check and verify their accuracy. All the while, there was time between each thing they did and either one or both of them would come out to talk to me so I wasn't alone while we waited for Dr. F to review or change a position. Once the positions were set, Jen tattooed me in 3 places with a tiny grey dot no bigger than a freckle so they can line me up correctly each time.
Finally, they had to make the mold of my breasts. They used a sheet of a substance (bosu?) that was soaking in warm water. They placed it over the front of my torso and after smoothing out the bubbles waited for it to dry and harden. When it was removed it could be my armor! Its a creamy white color that shows the entire shape of my torso - really could be a work of art!
The next step is to take all the pictures, scans, etc. and develop the treatment plan that will be administered by Jen and Rabah over 5 and a half weeks. The Dosimetrist designs this and Dr. F signs off on it - hopefully in the next week. Its looking like we'll start this all up on 6/6 - the sooner, the better!
Bob and I decided to definitely meet with Dr. F after we both agreed that the vibe we got from Dr. Doogie's nurse wasn't in line with all the rest of the people we met with along the way. She was not warm and inviting, kind and considerate - I'll stop there. No need to continue down the 'bashing' road.
We pulled up to our regular valet at Dyson just as we have since December. It was familiar to us - home. I checked in at the desk to another Mary and in no time was in the Radiology department discussing my history with Tara, Dr. F's nurse. She was warm and inviting, kind and considerate. She laughed along at our strange sense of humor. Much more our speed.
Dr. Faranghi came in and was also very professional and informative. While he was with us, he received 2 phone calls each from my doctors - Keleher and Rubin - to discuss my situation. We talked and shared and laughed. It was good and it felt right. He stepped out while I changed for the exam and Bob and I quickly agreed he was the one, this was the place. So we finished up and made plans for me to come back and prepare for the 28 radiation treatments in store for me.
Today, I spent a few hours at the Dyson center with the Radiation Therapists of the Radiology Department - Rabah (I hope I spelled that right - I kept calling him RaBOB!!) and Jen. These 2 took very good care of me while we spent the time creating molds of my torso and head and then the 'artwork' of my boob mold!
I layed back on a bed of beads like that of a bean bag chair. Rabah blew it up some how so it molded around my back, shoulders and head. We'll use this so I can ensure I'm in the same position every time for every treatment - they are looking for no mistakes or they'll miss the target!
Afterward, they had to mark the laser beam positions on me. I had different electrodes placed on and around me and I went in to the CT scan machine several times to check and verify their accuracy. All the while, there was time between each thing they did and either one or both of them would come out to talk to me so I wasn't alone while we waited for Dr. F to review or change a position. Once the positions were set, Jen tattooed me in 3 places with a tiny grey dot no bigger than a freckle so they can line me up correctly each time.
Finally, they had to make the mold of my breasts. They used a sheet of a substance (bosu?) that was soaking in warm water. They placed it over the front of my torso and after smoothing out the bubbles waited for it to dry and harden. When it was removed it could be my armor! Its a creamy white color that shows the entire shape of my torso - really could be a work of art!
The next step is to take all the pictures, scans, etc. and develop the treatment plan that will be administered by Jen and Rabah over 5 and a half weeks. The Dosimetrist designs this and Dr. F signs off on it - hopefully in the next week. Its looking like we'll start this all up on 6/6 - the sooner, the better!
Thursday, May 26, 2011
Phantom Nipples
You know how they say when you have a leg amputated, you can still feel the foot as if it was there? You can actually feel pain in the phantom foot.
In my case, it's my breasts! Remember, during my mastectomy, my nipples were taken along with an oval shaped portion of my skin so there is no reason I should feel them but when it's COLD I can feel the sensation that my nipples are standing up! My phantom nipples are still with me...
In my case, it's my breasts! Remember, during my mastectomy, my nipples were taken along with an oval shaped portion of my skin so there is no reason I should feel them but when it's COLD I can feel the sensation that my nipples are standing up! My phantom nipples are still with me...
Friday, May 20, 2011
2 B's or not 2 B's
I have to credit Bob on my title... it made me laugh!!
This week, I saw Dr. Sepulveda on Monday for my final fill up. I feel like I'm going to the gas station! I went in to see him not knowing if I was gonna let him add any more saline to my already uncomfortable breasts. We had to discuss the radiation factor now. When last we met, the Tumor Board was inconclusive. But with all the other info gathered since then, the recommendations for having radiation far out weighed those made for not having it. Dr. Sepulveda wants to do the radiation and then wait 6 months before the placement of the gel implants. That's the timeline.
6 months!!! Monday morning, the thought of leaving these saline expanders in for 6 months would make my skin crawl. But, after meeting with Dr. Sepulveda, I mentally felt better and soon I would physically too.
He assured me that my breasts with the expanders would not feel this way for much longer. He always told me it would be 4-6 weeks for recovery and this is week 4. Not like I wouldn't know they were there or anything, I would always feel them. I would just start to get used to them. He also stressed that I should go back to dance normally, run, whatever activity I would do before. My range of motion is almost fully back and the action would help the muscles stretch and heal faster.
He also added more saline.... I'm talking away with him about feeling tired and uncomfortable and not wanting any more, blah, blah and Dr. S has already asked his assistant Mary for a syringe filled with saline. Before I know it, he's hitting the port with the syringe and pricking my skin! He gives me a wry grin saying he has to make them 'even' ... He does the other while talking with Bob and I have to remind him to pay attention because he's missing the port and pricking me 2 and 3 times! He laughs and sits back and admires his work... yup, he's a Plastic Surgeon alright! I've become Dr. Frankenstein's monster!
I asked what size do you think I am??? He scrunched his face and looked sideways at my chest and with his accent said 'a B, maybe a large B' then grinned and rolled his eyes... yeah right. I know how much saline is in each - the right has 475cc and the left has 450cc. They are different because of the extensiveness of the surgery on the right side to rid it of cancer - the left wasn't as radical. He's stretching them beyond the final size so when the gel implants are put in there they'll move and simulate a natural breast. I went home and looked up what 475cc's would be considered on the internet.... ummm yeah no B in any description...C or D. I think I'm a small C at this point - I'll call them a B+! I'm getting used to them. I just may have to shop for some new clothes if they stay this way!
I left there with my chest feeling tight all over again. He told me it would feel 'softer' with in 48 hours. Softer is a relative term here... they did feel better by the next day, but by no means soft! He talked to me about not being afraid to use the Ambien if I need it - that helped me mentally not feel like I was overly dependent on it. The permission to dance??? Oh yeah - I did dance more the next day but still not where I was before I started I have lost so much strength that I have alot of catching up to do. I'll hit the track this weekend - walk/run for a few miles. All part of the plan for recovery.
Update - I am feeling better. A little trouble sleeping still, but better. I felt great at the studio on Tuesday and working every day on a fulltime schedule isn't wiping me out any more. My hair is coming in, eyebrows and lashes are stubble and I actually had to shave my legs this week!!! I was hoping that chore would be over, but I'll take it if it means I'm getting back to normal!!!
This week, I saw Dr. Sepulveda on Monday for my final fill up. I feel like I'm going to the gas station! I went in to see him not knowing if I was gonna let him add any more saline to my already uncomfortable breasts. We had to discuss the radiation factor now. When last we met, the Tumor Board was inconclusive. But with all the other info gathered since then, the recommendations for having radiation far out weighed those made for not having it. Dr. Sepulveda wants to do the radiation and then wait 6 months before the placement of the gel implants. That's the timeline.
6 months!!! Monday morning, the thought of leaving these saline expanders in for 6 months would make my skin crawl. But, after meeting with Dr. Sepulveda, I mentally felt better and soon I would physically too.
He assured me that my breasts with the expanders would not feel this way for much longer. He always told me it would be 4-6 weeks for recovery and this is week 4. Not like I wouldn't know they were there or anything, I would always feel them. I would just start to get used to them. He also stressed that I should go back to dance normally, run, whatever activity I would do before. My range of motion is almost fully back and the action would help the muscles stretch and heal faster.
He also added more saline.... I'm talking away with him about feeling tired and uncomfortable and not wanting any more, blah, blah and Dr. S has already asked his assistant Mary for a syringe filled with saline. Before I know it, he's hitting the port with the syringe and pricking my skin! He gives me a wry grin saying he has to make them 'even' ... He does the other while talking with Bob and I have to remind him to pay attention because he's missing the port and pricking me 2 and 3 times! He laughs and sits back and admires his work... yup, he's a Plastic Surgeon alright! I've become Dr. Frankenstein's monster!
I asked what size do you think I am??? He scrunched his face and looked sideways at my chest and with his accent said 'a B, maybe a large B' then grinned and rolled his eyes... yeah right. I know how much saline is in each - the right has 475cc and the left has 450cc. They are different because of the extensiveness of the surgery on the right side to rid it of cancer - the left wasn't as radical. He's stretching them beyond the final size so when the gel implants are put in there they'll move and simulate a natural breast. I went home and looked up what 475cc's would be considered on the internet.... ummm yeah no B in any description...C or D. I think I'm a small C at this point - I'll call them a B+! I'm getting used to them. I just may have to shop for some new clothes if they stay this way!
I left there with my chest feeling tight all over again. He told me it would feel 'softer' with in 48 hours. Softer is a relative term here... they did feel better by the next day, but by no means soft! He talked to me about not being afraid to use the Ambien if I need it - that helped me mentally not feel like I was overly dependent on it. The permission to dance??? Oh yeah - I did dance more the next day but still not where I was before I started I have lost so much strength that I have alot of catching up to do. I'll hit the track this weekend - walk/run for a few miles. All part of the plan for recovery.
Update - I am feeling better. A little trouble sleeping still, but better. I felt great at the studio on Tuesday and working every day on a fulltime schedule isn't wiping me out any more. My hair is coming in, eyebrows and lashes are stubble and I actually had to shave my legs this week!!! I was hoping that chore would be over, but I'll take it if it means I'm getting back to normal!!!
Thursday, May 19, 2011
Never last my ass!!!
It was a cold and windy and rainy Sunday. I tried on one dress and bought it off the rack. I fixed my own hair and did my own makeup. The sun came out and I was surrounded by my family and friends as I walked down the aisle with my father to marry this guy I met 1 year and 11 months before. Two people from opposite ends of the spectrum somehow brought together by fate. One wedding guest (whom shall remain nameless!!) leaned over to my mother and said, 'it'll never last'.
We knew it wasn't going to be easy but it didn't matter. We were in love. The Jew and the Catholic. Blue collar and white collar. So different, but so much in common. Like a jigsaw puzzle, we just fit together.
Let's fast forward 26 years...
I spend my days and nights with Bob. We live and work and play together. We are lucky enough to have 2 beautiful children that we raised to be independent successful adults. So many wonderful things to recount over the years that its just too many to list. We've had ups and downs, but always came out on top. We are blessed in so many ways.
Why am I writing about this on my Breast Cancer blog? Because it's here that I want to say if it were not for Bob, the success of these past 6 months would not have been possible. He was with me at every doctor appointment, at every chemo treatment, at every moment of stress. Bob was asking questions, researching information, making plans, helping with my dressings and medications. He was cleaning the house, making dinner, driving me everywhere I needed to be. He held my hands before surgery and hugged me when I was afraid and never once made me feel less of a woman. He was and is unbelievably supportive. I think it even surprised him how much.
Bob has this way of putting a timeline on everything. So when I was crying in the car on our way to chemo treatment #3 and I felt like I was going nowhere fast, Bob started talking to me about being almost done with #3, which meant we were virtually at treatment #4, which was over the half way point, which brought us straight to #5 with treatment #6 right after and practically done. I suddenly was almost finished with chemo even before I got out of the car! Quite the salesman, he is. It was a good way to give me some perspective to work with even though it wasn't very accurate! Plus, it made me laugh... always a good thing.
I love him for all he is and all he's done for me, for us, for our family. This disease I have made us stronger as a couple - a force. He held me up and I would turn around and do the same for him. We always knew we would go the distance way back in 1985, but we never thought we'd be faced with cancer in this way. We've proven that we can overcome any adversity and wiped away the thought that I might not be here for the future years. I'm thrilled that we are able to celebrate our 26th anniversary together and look forward to many more!
I love you Bobby ..........
We knew it wasn't going to be easy but it didn't matter. We were in love. The Jew and the Catholic. Blue collar and white collar. So different, but so much in common. Like a jigsaw puzzle, we just fit together.
Let's fast forward 26 years...
I spend my days and nights with Bob. We live and work and play together. We are lucky enough to have 2 beautiful children that we raised to be independent successful adults. So many wonderful things to recount over the years that its just too many to list. We've had ups and downs, but always came out on top. We are blessed in so many ways.
Why am I writing about this on my Breast Cancer blog? Because it's here that I want to say if it were not for Bob, the success of these past 6 months would not have been possible. He was with me at every doctor appointment, at every chemo treatment, at every moment of stress. Bob was asking questions, researching information, making plans, helping with my dressings and medications. He was cleaning the house, making dinner, driving me everywhere I needed to be. He held my hands before surgery and hugged me when I was afraid and never once made me feel less of a woman. He was and is unbelievably supportive. I think it even surprised him how much.
Bob has this way of putting a timeline on everything. So when I was crying in the car on our way to chemo treatment #3 and I felt like I was going nowhere fast, Bob started talking to me about being almost done with #3, which meant we were virtually at treatment #4, which was over the half way point, which brought us straight to #5 with treatment #6 right after and practically done. I suddenly was almost finished with chemo even before I got out of the car! Quite the salesman, he is. It was a good way to give me some perspective to work with even though it wasn't very accurate! Plus, it made me laugh... always a good thing.
I love him for all he is and all he's done for me, for us, for our family. This disease I have made us stronger as a couple - a force. He held me up and I would turn around and do the same for him. We always knew we would go the distance way back in 1985, but we never thought we'd be faced with cancer in this way. We've proven that we can overcome any adversity and wiped away the thought that I might not be here for the future years. I'm thrilled that we are able to celebrate our 26th anniversary together and look forward to many more!
I love you Bobby ..........
Sunday, May 15, 2011
I would if I could
The days go by and you just do what you have to do. I had some trouble this week and realized I was just dealing with it and not sharing it. Sometimes I do forget that there are others out there that may be helped by my posts, so here goes.
Thursday was the 3rd week since my surgery. I'm coming along pretty well. The drains came out and the entry areas are healing. They were located at my sides just about 4 inches below my arm pits and have been a little swollen and sore but getting better. The soreness made it very difficult to wear a bra since the elastic pushed right against the areas.
Sleeping was still hard for me. Being a stomach sleeper, the urge to roll over can happen all night. I couldn't even consider sleeping on my stomach because I couldn't get past my sides! So it was another several nights of sleeping on my back - uncomfortably.
Worse than all that are the temporary implants. I can feel them all day. They are kind of heavy and a little sore against my chest wall. I had to go buy a couple of new bras because the ones I usually wear don't fit the shape of the ones I'm 'sporting' now. The expanders are filled with enough saline to make me a B-cup which is where I want to end up. Dr. S will fill a little more, I'm afraid, to have enough skin to work with. I was kind of surprised that I have 'boobage' under my armpit! But, that's where the extra skin is going to come from to create the finished products.
Back to where I left off.... I can feel them all day but it's tolerable. It's nighttime that bothers me still. I had several days in a row where only an hour or two of sleep came over me. Same thing as I described in a previous post - I would finally settle into a comfortable position and suddenly my legs would get jumpy. Restless leg syndrome. By Thursday - I had had it. Lucky Bob got to see my little sleep-deprived breakdown in full force. I was ready to get these things out of me! If I could take them out myself, I would. It was that bad.
I used one of my Ambien's that night and that helped alot. A good night sleep can make everything better. I still want to get these temporary ones out - they feel like bags of peanut m&m's moving around in there.
Friday, we met with Dr. Doogie, Dr. Koutcher the very 'young' radiologist, and after our meeting he spoke with Dr. Sepulveda directly to discuss timing of the radiation vs. permanent implant surgery. Dr. Doogie reported back to me that Dr. S said radiation first, then wait 6 months for surgery! 6 MONTHS!!! I cannot wait 6 months with these keeping me up at night! While things get a little better every day, if he can't tell me they will feel better soon, like within a few weeks, then I want them out!
I have a meeting with Dr. S tomorrow.... I gotta get the story straightened out.
Thursday was the 3rd week since my surgery. I'm coming along pretty well. The drains came out and the entry areas are healing. They were located at my sides just about 4 inches below my arm pits and have been a little swollen and sore but getting better. The soreness made it very difficult to wear a bra since the elastic pushed right against the areas.
Sleeping was still hard for me. Being a stomach sleeper, the urge to roll over can happen all night. I couldn't even consider sleeping on my stomach because I couldn't get past my sides! So it was another several nights of sleeping on my back - uncomfortably.
Worse than all that are the temporary implants. I can feel them all day. They are kind of heavy and a little sore against my chest wall. I had to go buy a couple of new bras because the ones I usually wear don't fit the shape of the ones I'm 'sporting' now. The expanders are filled with enough saline to make me a B-cup which is where I want to end up. Dr. S will fill a little more, I'm afraid, to have enough skin to work with. I was kind of surprised that I have 'boobage' under my armpit! But, that's where the extra skin is going to come from to create the finished products.
Back to where I left off.... I can feel them all day but it's tolerable. It's nighttime that bothers me still. I had several days in a row where only an hour or two of sleep came over me. Same thing as I described in a previous post - I would finally settle into a comfortable position and suddenly my legs would get jumpy. Restless leg syndrome. By Thursday - I had had it. Lucky Bob got to see my little sleep-deprived breakdown in full force. I was ready to get these things out of me! If I could take them out myself, I would. It was that bad.
I used one of my Ambien's that night and that helped alot. A good night sleep can make everything better. I still want to get these temporary ones out - they feel like bags of peanut m&m's moving around in there.
Friday, we met with Dr. Doogie, Dr. Koutcher the very 'young' radiologist, and after our meeting he spoke with Dr. Sepulveda directly to discuss timing of the radiation vs. permanent implant surgery. Dr. Doogie reported back to me that Dr. S said radiation first, then wait 6 months for surgery! 6 MONTHS!!! I cannot wait 6 months with these keeping me up at night! While things get a little better every day, if he can't tell me they will feel better soon, like within a few weeks, then I want them out!
I have a meeting with Dr. S tomorrow.... I gotta get the story straightened out.
Saturday, May 14, 2011
Radiator
Had my visit with Dr. Rubin on Monday. As usual our 1 hour appointment ran over to almost 2.
Bob and I asked him for his opinion what to do with regards to the pathology results and what actions to take based on the tumor board. At first, he gave us the classic answer we've been hearing of it's your decision. But we pressed him further... Bob especially.
Bob and I are baffled by the word 'inconclusive' in regards to the Tumor Board findings. We come to a doctor for their assessment of the situation and then their educated opinion on what to do. A recommendation. Not 'it's your decision'. What am I going to do, look it up on the Internet and read about it? That's going to make me qualified enough to make this decision? No. Ultimately, I know I will come to my conclusion, but I want to make that decision with the knowledge that my team of doctors feel one way or another and then weigh all my options.
We've grown to know and trust my 'team' of doctors over the past few months. Dr. Rubin is a the kind of guy who put up with all our questions and concerns by hearing us out, laughing along with us and guiding us along the way. If we stumped him, he would research it and get back to us. This would be no exception.
He got it. Inconclusive was not what he was going to be. He asked permission to speak to his mentor and a colleague to discuss my case and get back to us. Of course, I said yes! I'm not one to hide much as evidenced by this blog!!! Anyway, Dr. R spent the day calling and researching in between his regular appointments so he could make a recommendation to us. I got the call around 5pm that same day. Dr. R not only discussed my case with his mentor and colleague, but he decided to call to Sloan- Kettering to speak with Dr. Larry Norton - the Deputy Physician-in-Chief there and an oncologist specializing in breast cancer. Dr. R didn't know him, he just called and left him a message to give it a try. Much to his surprise, Dr. R got a call back! (His excitement about this came flying thru the phone to me!!) Anyway, Dr. R read all of the pathology to him and before he was finished, Dr. Norton's reaction was - she has to do radiation. It was clear to him simply by the estimated size of the tumor among many other factors.
There are 3 primary factors that determine whether to radiate or not - 4 or more lymph nodes effected, tumor 5cm or larger, (don't remember #3). Because I got all my chemo up front - neoadjavant - who knows how many lymph nodes were actually originally effected. We do know there was one with a small evidence of cancer found in one after 6 rounds of chemo. The size of the tumor could also have been effected but this is bit more clearly defined. The tumor gets attacked like shooting a shot gun at it... so it ends up like swiss cheese and edges are still there. You get the picture, I hope.
Dr. Rubin was confident in what he said next - 'If it were my wife, I'd recommend radiation'. He strove to gather enough information to give us what we wanted - a real opinion on what to do next. I cannot believe his effort and appreciate all that he has done for me and Bob.
But, to my surprise, it wasn't over. Dr. Norton called Dr. Rubin back a few days later. Dr. Norton had taken my case and presented it to the Tumor Board at Sloan-Kettering!! Consensus was - radiation. Furthermore, he consulted with his go-to radiologist and they devised a plan which he further passed onto Dr. Rubin! I cannot believe all this myself!!
Dr. Rubin gave me a referral to a radiation oncologist located next to St. Francis Hospital. His name is Dr. Koucher. Dr. R warned me he looked young. I asked, 'Doogie Houser young?' Dr. R just laughed... well, let me tell you - yes! Doogie Houser young!!! He looks barely 17, its almost shocking! (I forgot to warn Bob... he was pretty surprised himself!) Young but very knowledgeable. He talked to us at length about treatment plans, short term and long term side effects, etc. I left him feeling much better about the benefit/risk ratio. There really isn't a question any more. I will have radiation. I just have to figure out the timing.
Bob and I asked him for his opinion what to do with regards to the pathology results and what actions to take based on the tumor board. At first, he gave us the classic answer we've been hearing of it's your decision. But we pressed him further... Bob especially.
Bob and I are baffled by the word 'inconclusive' in regards to the Tumor Board findings. We come to a doctor for their assessment of the situation and then their educated opinion on what to do. A recommendation. Not 'it's your decision'. What am I going to do, look it up on the Internet and read about it? That's going to make me qualified enough to make this decision? No. Ultimately, I know I will come to my conclusion, but I want to make that decision with the knowledge that my team of doctors feel one way or another and then weigh all my options.
We've grown to know and trust my 'team' of doctors over the past few months. Dr. Rubin is a the kind of guy who put up with all our questions and concerns by hearing us out, laughing along with us and guiding us along the way. If we stumped him, he would research it and get back to us. This would be no exception.
He got it. Inconclusive was not what he was going to be. He asked permission to speak to his mentor and a colleague to discuss my case and get back to us. Of course, I said yes! I'm not one to hide much as evidenced by this blog!!! Anyway, Dr. R spent the day calling and researching in between his regular appointments so he could make a recommendation to us. I got the call around 5pm that same day. Dr. R not only discussed my case with his mentor and colleague, but he decided to call to Sloan- Kettering to speak with Dr. Larry Norton - the Deputy Physician-in-Chief there and an oncologist specializing in breast cancer. Dr. R didn't know him, he just called and left him a message to give it a try. Much to his surprise, Dr. R got a call back! (His excitement about this came flying thru the phone to me!!) Anyway, Dr. R read all of the pathology to him and before he was finished, Dr. Norton's reaction was - she has to do radiation. It was clear to him simply by the estimated size of the tumor among many other factors.
There are 3 primary factors that determine whether to radiate or not - 4 or more lymph nodes effected, tumor 5cm or larger, (don't remember #3). Because I got all my chemo up front - neoadjavant - who knows how many lymph nodes were actually originally effected. We do know there was one with a small evidence of cancer found in one after 6 rounds of chemo. The size of the tumor could also have been effected but this is bit more clearly defined. The tumor gets attacked like shooting a shot gun at it... so it ends up like swiss cheese and edges are still there. You get the picture, I hope.
Dr. Rubin was confident in what he said next - 'If it were my wife, I'd recommend radiation'. He strove to gather enough information to give us what we wanted - a real opinion on what to do next. I cannot believe his effort and appreciate all that he has done for me and Bob.
But, to my surprise, it wasn't over. Dr. Norton called Dr. Rubin back a few days later. Dr. Norton had taken my case and presented it to the Tumor Board at Sloan-Kettering!! Consensus was - radiation. Furthermore, he consulted with his go-to radiologist and they devised a plan which he further passed onto Dr. Rubin! I cannot believe all this myself!!
Dr. Rubin gave me a referral to a radiation oncologist located next to St. Francis Hospital. His name is Dr. Koucher. Dr. R warned me he looked young. I asked, 'Doogie Houser young?' Dr. R just laughed... well, let me tell you - yes! Doogie Houser young!!! He looks barely 17, its almost shocking! (I forgot to warn Bob... he was pretty surprised himself!) Young but very knowledgeable. He talked to us at length about treatment plans, short term and long term side effects, etc. I left him feeling much better about the benefit/risk ratio. There really isn't a question any more. I will have radiation. I just have to figure out the timing.
Monday, May 9, 2011
Pathology
Those 8 abnormal cells found in the sentinel lymph node went under more scrutiny by the scientists for a few days after my surgery as did the rest of the extracted tissue. Dr. Keleher called to fill me in on the results:
- left breast was cancer free as predicted
- right breast showed evidence of a large (7cm by 9cm) tumor that was virtually dead except for a .8mm spec found within the aureole complex of the nipple. Surrounding skin and muscle were clear.
- sentinel lymph node also showed a few specs even smaller. These are visually similar to 'salt' as described by Dr. Keleher. The pathologist has to report them if they are in the range of .2-2mm. My largest was .35 - just at the bottom of the range.
- second lymph node showed no signs of cancer.
(that's the abridged version of the 4 page report!!!)
What's all this mean? Dr. Keleher is confident she has gotten all the cancer. Because of a few factors, she's asked me if I she could present my case to the Tumor Board. This is a group of medical professionals that meet to review cases, discuss results and recommend actions. The factors she's referring to are specifically my age and the original size of the tumor. The actions to discuss? To radiate or not to radiate to prevent reoccurence. Of course, I agree. To get the educated opinion of so many professionals at once is a bonus!
Dr. Keleher and I finally connect a few days after the Tumor Board met. After presenting and discussing my case, the group was inconclusive. There was no evidence my life would be effected in a positive way if I chose to do radiation. In fact, the risks could out weight the benefits. Among the group were several radiologists and even they didn't recommend radiation. My cynical side insisted they would opt for their discipline if not for monetary reasons... Dr. K assured me ethically they wouldn't and it seems she was right. Still, she didn't commit to a yeah or nah and left the decision up to me - as it always was. She recommended I see a radiologist that wasn't at the Tumor Board and have them review my situation and see what they say one on one. If I were to opt for the treatment, what would it be, that kind of thing.
Two of my other doctors were there - Sepulveda and Rubin. I saw Dr. S on Friday. His answer was clear when I posed the question of what he felt about the Tumor Board discussion - 'If it were my wife or daughter, I wouldn't do it!' Right there - straight and to the point. It was good to hear honest plain english. I'll visit Dr. Rubin today and see what he has to say too.
Once I have all my opinions from all my 'trusted' advisors, I'll do my own research about risks vs. benefits of radiation and make my decision. This has all been quite an education.
- left breast was cancer free as predicted
- right breast showed evidence of a large (7cm by 9cm) tumor that was virtually dead except for a .8mm spec found within the aureole complex of the nipple. Surrounding skin and muscle were clear.
- sentinel lymph node also showed a few specs even smaller. These are visually similar to 'salt' as described by Dr. Keleher. The pathologist has to report them if they are in the range of .2-2mm. My largest was .35 - just at the bottom of the range.
- second lymph node showed no signs of cancer.
(that's the abridged version of the 4 page report!!!)
What's all this mean? Dr. Keleher is confident she has gotten all the cancer. Because of a few factors, she's asked me if I she could present my case to the Tumor Board. This is a group of medical professionals that meet to review cases, discuss results and recommend actions. The factors she's referring to are specifically my age and the original size of the tumor. The actions to discuss? To radiate or not to radiate to prevent reoccurence. Of course, I agree. To get the educated opinion of so many professionals at once is a bonus!
Dr. Keleher and I finally connect a few days after the Tumor Board met. After presenting and discussing my case, the group was inconclusive. There was no evidence my life would be effected in a positive way if I chose to do radiation. In fact, the risks could out weight the benefits. Among the group were several radiologists and even they didn't recommend radiation. My cynical side insisted they would opt for their discipline if not for monetary reasons... Dr. K assured me ethically they wouldn't and it seems she was right. Still, she didn't commit to a yeah or nah and left the decision up to me - as it always was. She recommended I see a radiologist that wasn't at the Tumor Board and have them review my situation and see what they say one on one. If I were to opt for the treatment, what would it be, that kind of thing.
Two of my other doctors were there - Sepulveda and Rubin. I saw Dr. S on Friday. His answer was clear when I posed the question of what he felt about the Tumor Board discussion - 'If it were my wife or daughter, I wouldn't do it!' Right there - straight and to the point. It was good to hear honest plain english. I'll visit Dr. Rubin today and see what he has to say too.
Once I have all my opinions from all my 'trusted' advisors, I'll do my own research about risks vs. benefits of radiation and make my decision. This has all been quite an education.
Wednesday, May 4, 2011
Miles of Hope weekend... Sorority
Miles of Hope Brunch
My friend Lisa Arnoff is an incredibly dedicated volunteer for this organization. Through Lisa, I met Dana Effron. This woman didn't know me, but was on the phone talking to me the weekend after I found out I had breast cancer. Lisa and Dana were there to offer help and support in any way that I needed.
What I experienced at the brunch on Sunday was incredible. The room was filled with people giving money, time, support and energy to the cause and the people affected by it. Many of these people were friends, acquaintances, medical professionals, etc. that I've met along the way. Some were complete strangers. Others were afflicted with this disease just as I am. Dana called us a sorority, a sisterhood of sorts.
While I would never choose to have breast cancer, I would choose to be included in this strong and brave band of people. People who understand what it is to question why and yet appreciate the lessons to be taught and learned. I'm proud to be a part of it.
My friend Lisa Arnoff is an incredibly dedicated volunteer for this organization. Through Lisa, I met Dana Effron. This woman didn't know me, but was on the phone talking to me the weekend after I found out I had breast cancer. Lisa and Dana were there to offer help and support in any way that I needed.
What I experienced at the brunch on Sunday was incredible. The room was filled with people giving money, time, support and energy to the cause and the people affected by it. Many of these people were friends, acquaintances, medical professionals, etc. that I've met along the way. Some were complete strangers. Others were afflicted with this disease just as I am. Dana called us a sorority, a sisterhood of sorts.
While I would never choose to have breast cancer, I would choose to be included in this strong and brave band of people. People who understand what it is to question why and yet appreciate the lessons to be taught and learned. I'm proud to be a part of it.
Miles of Hope weekend... Survivor
Miles of Hope Walk/Run
For all the years of it's existence, I've avoided this event. Not because I didn't believe in the cause, but because I don't run 'short' races! Lori Decker chairs this event and for many years it was based out of Crush Fitness - the gym I was a member of. I would cruise into the gym on that day and hit the treadmill as usual. I'd make my donation, but join the race - not for me.
This year was the year for me to be there. I signed up as a volunteer since the thought of running/walking it 10 days after my surgery wasn't realistic. Ironically, the volunteer coordinator is Sarah Long - my trainer from my Crush days! We have a nice round of emails between us and it's set - she'll place me in a low-stress position and I'll have my Sarah with me so we can share the work.
Sarah and I arrive on the freezing cold morning totally not dressed correctly. We are placed on the registration table - the only place the sun is shining to keep us warm! The traffic at the table starts slowly, but gets very busy as race time approaches. Most people are wearing pink... me? I'm wearing my yellow t-shirt from my dancer girls - 'Yes, these are FAKE. My real ones tried to kill me!' It got a lot of laughs and smiles!
Somewhere in the middle of all this, I hear my name being called from my right. They are putting together a Survivor group photo and calling my name to come join them. Right. I am a survivor. A SURVIVOR!! I still can't believe it's me...
For all the years of it's existence, I've avoided this event. Not because I didn't believe in the cause, but because I don't run 'short' races! Lori Decker chairs this event and for many years it was based out of Crush Fitness - the gym I was a member of. I would cruise into the gym on that day and hit the treadmill as usual. I'd make my donation, but join the race - not for me.
This year was the year for me to be there. I signed up as a volunteer since the thought of running/walking it 10 days after my surgery wasn't realistic. Ironically, the volunteer coordinator is Sarah Long - my trainer from my Crush days! We have a nice round of emails between us and it's set - she'll place me in a low-stress position and I'll have my Sarah with me so we can share the work.
Sarah and I arrive on the freezing cold morning totally not dressed correctly. We are placed on the registration table - the only place the sun is shining to keep us warm! The traffic at the table starts slowly, but gets very busy as race time approaches. Most people are wearing pink... me? I'm wearing my yellow t-shirt from my dancer girls - 'Yes, these are FAKE. My real ones tried to kill me!' It got a lot of laughs and smiles!
Somewhere in the middle of all this, I hear my name being called from my right. They are putting together a Survivor group photo and calling my name to come join them. Right. I am a survivor. A SURVIVOR!! I still can't believe it's me...
Sunday, May 1, 2011
Trouble Sleeping RECAP (sorry so long!!!)
I've been having some trouble sleeping this week ever since I had my surgery. I'm not feeling pain or anything like that, just a level of discomfort that keeps me up. I first slept sitting up in a chair. Next tried the 45 degree angle on the sofa. The bed was by far the hardest. I may sleep for a few hours but I'd be up and moving to a different venue to try to get comfortable all over again.
While I may experience some pain/discomfort at the site of my surgery and implants, it's really the drainage system that is bothering me at my sides. Just a few inches below my armpits, 2 tubes protrude. It's there that bothers me most. Very sore.
I weened myself off of the Oxycodone on day 5 after surgery - during the day. I really didn't need it then. This is something i could live with and did fine - until night time. I decided to continue with the medication before bed time to at least continue to get a few restful hours before moving to a 'new spot' just like my dog Bailey!
I had Sarah home and even though I was 'recovering' I wanted to do what ever I could with her - life as usual. Monday was our first visit back to Dr. Sepulveda. Things were going well but he wasn't ready to take out any of the drains... sadly... but that's ok. I was cleared to shower on Tuesday and that news was great to hear!
Tuesday we spent the morning doing some 'work' - school for Sarah and business for me. It was a beautiful day and didn't want to miss it. We met Dawn (and Barbara) for lunch and we were off to the Walkway Over The Hudson. I was moving slowly but I was moving! Dr. Keleher told me to keep 'moving and groovy' to help the healing process. We made it to the Ulster side and I sat for a few minutes to rest. The way back was much better; almost like we were walking down hill! Either way, it took us much longer than we expected and rushed home to rest a (very) little and head out once again. This time to the studio.
Yes, call me crazy but I went to the studio on Tuesday. I know my limitations and decided to go instead of sitting at home wondering what they were doing and what I was missing! Besides, I'm used to teaching from a chair these days and could do it again. The funny thing is now that my legs are working, my arms aren't! I sat on my chair and used my hands below my shoulders conveying what I could. It didn't always come out right the first time, but eventually they all got it. Even if things don't run normally, Tuesdays at the studio are a joy to me and I'm not willing to pass them up if I can help it.
After all my exercise that day, I saved the coveted shower for bedtime!! Bob was instructed by Dr. Sepulveda on how and what to do to change my dressings at the drain sites. They supplied a written instruction too and on the page it mentioned a possibility of 'lightheadedness'. (is that one word??) Anyway, I jumped into my luke warm shower and boy did it feel good! Not that I haven't been washing but a real shower trumps a sponge bath any day! Afterward, Bob had the task of putting dressings back on. Somewhere in the middle of the first side, I suddenly felt nauseous and lightheaded - just like the doctor said!!! Happily it didn't last long and Bob finished the other side while I layed down. Just sharing this information so others in my shoes realize the doctor knows what he is talking about!
That night I slept pretty well on the sofa. A solid 5 hours. I figured I was over the hump.
Wednesday and Thursday we did a few errands, worked a little and cooked. Both nights found me wandering around the house for a comfortable place to lay my head. Wednesday was difficult because I was wide awake for no apparent reason. I could usually fall asleep pretty easily. STAYING asleep was the problem. Not this time.
Thursday we went out to dinner with the intentions of stopping at the grocery store to pick up a few 'essentials' for our Royal Breakfast the next day. I think the excitement got the best of me as I spent several hours finding the silver and setting out the china tea cups and such. I slept a few hours before giving up and going down to the kitchen to make my scones. Time ticked by quickly and we had to dress in our wedding garb - the Queen, the Princess and King Margarine!!! We had a blast but I was beat before our guests Shelly and Britney arrived for tea at 8am!!!
A few hours later, we were off to see Dr. Sepulveda for another check. This time he removed 2 of the drains and I was very relieved! I was very proud to tell him about the activity level I had been enjoying and watched his face contort as I mentioned walking a 5k at the Miles of Hope event! He 'scolded' me for doing too much!! But, in my defense, I was told to 'move and groove' and that activity would be good for me, blah, blah... but, as he explained, he meant don't lay in bed all day not go out and walk 2 miles!!! Ooops... I think he should have qualified that! He obviously doesn't know me very well!!!
One last event for the day - Barbara's birthday dinner! We had a great time with great people and it flew by. It was not a late night and I was happy to be home to try to settle down and get some much needed sleep after a string of days with just a few hours each. But this night would be the worst of all!! My body was extremely restless and jumpy with very little hope of settling down anywhere - and I tried! I did a few laps around the house to try to release the anxiety in my muscles to no avail. The last I looked at the clock it was 4:30am.... and I had to be at Tymor Park for Miles of Hope at 7:30am - it's gonna be a long day.....
While I may experience some pain/discomfort at the site of my surgery and implants, it's really the drainage system that is bothering me at my sides. Just a few inches below my armpits, 2 tubes protrude. It's there that bothers me most. Very sore.
I weened myself off of the Oxycodone on day 5 after surgery - during the day. I really didn't need it then. This is something i could live with and did fine - until night time. I decided to continue with the medication before bed time to at least continue to get a few restful hours before moving to a 'new spot' just like my dog Bailey!
I had Sarah home and even though I was 'recovering' I wanted to do what ever I could with her - life as usual. Monday was our first visit back to Dr. Sepulveda. Things were going well but he wasn't ready to take out any of the drains... sadly... but that's ok. I was cleared to shower on Tuesday and that news was great to hear!
Tuesday we spent the morning doing some 'work' - school for Sarah and business for me. It was a beautiful day and didn't want to miss it. We met Dawn (and Barbara) for lunch and we were off to the Walkway Over The Hudson. I was moving slowly but I was moving! Dr. Keleher told me to keep 'moving and groovy' to help the healing process. We made it to the Ulster side and I sat for a few minutes to rest. The way back was much better; almost like we were walking down hill! Either way, it took us much longer than we expected and rushed home to rest a (very) little and head out once again. This time to the studio.
Yes, call me crazy but I went to the studio on Tuesday. I know my limitations and decided to go instead of sitting at home wondering what they were doing and what I was missing! Besides, I'm used to teaching from a chair these days and could do it again. The funny thing is now that my legs are working, my arms aren't! I sat on my chair and used my hands below my shoulders conveying what I could. It didn't always come out right the first time, but eventually they all got it. Even if things don't run normally, Tuesdays at the studio are a joy to me and I'm not willing to pass them up if I can help it.
After all my exercise that day, I saved the coveted shower for bedtime!! Bob was instructed by Dr. Sepulveda on how and what to do to change my dressings at the drain sites. They supplied a written instruction too and on the page it mentioned a possibility of 'lightheadedness'. (is that one word??) Anyway, I jumped into my luke warm shower and boy did it feel good! Not that I haven't been washing but a real shower trumps a sponge bath any day! Afterward, Bob had the task of putting dressings back on. Somewhere in the middle of the first side, I suddenly felt nauseous and lightheaded - just like the doctor said!!! Happily it didn't last long and Bob finished the other side while I layed down. Just sharing this information so others in my shoes realize the doctor knows what he is talking about!
That night I slept pretty well on the sofa. A solid 5 hours. I figured I was over the hump.
Wednesday and Thursday we did a few errands, worked a little and cooked. Both nights found me wandering around the house for a comfortable place to lay my head. Wednesday was difficult because I was wide awake for no apparent reason. I could usually fall asleep pretty easily. STAYING asleep was the problem. Not this time.
Thursday we went out to dinner with the intentions of stopping at the grocery store to pick up a few 'essentials' for our Royal Breakfast the next day. I think the excitement got the best of me as I spent several hours finding the silver and setting out the china tea cups and such. I slept a few hours before giving up and going down to the kitchen to make my scones. Time ticked by quickly and we had to dress in our wedding garb - the Queen, the Princess and King Margarine!!! We had a blast but I was beat before our guests Shelly and Britney arrived for tea at 8am!!!
A few hours later, we were off to see Dr. Sepulveda for another check. This time he removed 2 of the drains and I was very relieved! I was very proud to tell him about the activity level I had been enjoying and watched his face contort as I mentioned walking a 5k at the Miles of Hope event! He 'scolded' me for doing too much!! But, in my defense, I was told to 'move and groove' and that activity would be good for me, blah, blah... but, as he explained, he meant don't lay in bed all day not go out and walk 2 miles!!! Ooops... I think he should have qualified that! He obviously doesn't know me very well!!!
One last event for the day - Barbara's birthday dinner! We had a great time with great people and it flew by. It was not a late night and I was happy to be home to try to settle down and get some much needed sleep after a string of days with just a few hours each. But this night would be the worst of all!! My body was extremely restless and jumpy with very little hope of settling down anywhere - and I tried! I did a few laps around the house to try to release the anxiety in my muscles to no avail. The last I looked at the clock it was 4:30am.... and I had to be at Tymor Park for Miles of Hope at 7:30am - it's gonna be a long day.....
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